New guy, double vision and more
 

So, I'm new to this forum. I have had double vision and droopy eyelid (s) for a year and a half. The blood tests were negative a year ago. The neurologist I went to in December did not think I had Myasthenia, but said that I was welcome to come back to him any time, and did not need a referral. I also have a epi retinal membrane, and of course, a growing cataract in one eye. Getting to the point, my optometrist has tried at least 6, probably more, prism combinations, all to no avail. The last stick-on worked for a couple hours, but now, is not working. Does this sound familiar to any one? Thank-you

I recommend a Neuro-opto
Mike

Hello and welcome, Rod. I'm in agreement with Mike. Given the information in your post, I too, suggest that you see a Neuro-Ophthalmologist. If you can't locate one in your area, then an Ophthalmologist is the next best thing. While I feel there is nothing wrong with an Optometrist (and I do understand they are trained for some diagnoses) an Ophthalmologist is a doctor of medicine--an optometrist is not.

Optometrists, who refer patients when things become "interesting" are worth their weight in gold.

I'd add to Mike's good suggestion and suggest that you find a new neuro as well! You are not being treated adequately for what seems very probably to be MG. In any case, it's SOMETHING that deserves better treatment.

So sorry you are dealing with this. DV is tough!

Thanks
 

Thanks to both of you. My optrician has been has been trying and trying, and has not charged me a penny. I've been in a dozen times or more in the last year or so. I have seen a muscle guy, a droopy eye lid guy, and the neuro guy once. Just keep going in a circle. I just needed a little encouragement to go back to the neuo guy again. He is a neuro-ophthamalogist. Thanks again

My neuro-opthalmologist told me that prisms generally only work for a period of time. I got some, used them very successfully for a while, then took them off completely for a couple of weeks. Then the doubles came back, so I stuck them back in the glasses. OK for a while, but now I still get some double vision the prisms don't correct. That's when the neuro guy told me that they only work for a while. So I'm happy when they work, and go back to closing one eye when they don't and I need to see mono with my distant vision.

Susan

Have you tried Mestinon? It can stabilize your symptoms so you may have better luck with the Prisms. Some MGers eye symptoms are very variable, in which case they have more trouble finding a double vision correction.

My eye symptoms are very constant with the double vision so Prism work great for me. I would agree you should see a neuro and perhaps try Mestinon to see if it improves your symptoms.

Is your MG only ocular or have you had any generalized weakness?

Ice packs on my eyes help when the eye symptoms get really bad.

Good Luck
kathie

It is very strange and perplexing. When I am in the optometrist office, he can use prisms to give me single vision, but when I get the lenses or press ons, I still have DV. This week, the press ons worked for a while on the first day, and I had the first single vision in quite a while, but stopped working even on the same day. I've not used any meds yet, but did make another appointment with the neuro guy yesterday. Fortunately, its only 2 weeks out. I have prism already in the lens, and just keep adding with the press ons. I always have DV. Not sure how closely the eyelid thing is correlated. There is always some droop, sometimes more, sometimes less. Regarding general muscle weakness, no problem eating at all, and I'm still trying to define exactly what is going on, don't know what is significant, and what is age. Sometimes when I wake up in the AM, my arms feel like I've been lifting weights, when I've not done anything. I am amazed how tired my lower legs feel when I walk up stairs sometimes. They feel sort of wooden, and I need to pace myself. I am still working, but I find that on weekends I want to rest in the easy chair sometimes once or twice. On the other side, I did a big time brick project in my back yard, which involved a lot of heavy work. I was able to do it, just needed to rest often. BTW, I had looked at this site only a few times before, and just joined yesterday. I am very glad I did. Thank-you, Rod

i had a false negative on my test when my symptoms first started. four months later, i tested positive. My neuro opthamologist said that was very common.

HI Rod

You sound like me - - I can do lots of stuff (sometimes) that you wouldn't think someone with MG could do. But then there are the days when I walk like a duck and feel wobbly all day.

Usually, I take a few days to 'think' about the garden project or whatever, then pour myself into the project for a day...and then take a few days to recover!!

And I totally understand 'what is age and what is MG' - - I blame one or the other depending on my mood at that moment!!

Hope can get to the 'right combination' for your dv. Luckily my eyes are on wonky / blinky - - but no dv yet.